Emerging epidemiological trends in India indicate the rising burden of cardiovascular diseases (CVDs) demanding a need of a social support system. Yet, the list of 21 benchmark disabilities notified by the Department of Empowerment of Persons with Disabilities, Ministry of Social Justice and Empowerment, Government of India, does not include CVDs under the newly enacted Rights of Persons with Disabilities (RPWD) Act, 2016. While the RPWD Act 2016 has acknowledged the dynamic nature of disabilities associated with congenital diseases like thalassemia, it has also provided an opportunity to bring in “cardiac disability” under its tenets. This would allow India to adopt strategies for the benefit of cardiac patients in accordance with policies adopted by developed countries such as the United States of America (USA), the United Kingdom of Great Britain (UK), and Canada. This document is to initiate a thought process of recruitment of cardiac patients in the social justice system.
Aims and objectives
(1) To define cardiac disability, (2) to categorize cardiac diseases/defects (groups A–C) according to severity and need for interventions, (3) to identify operated and unoperated patients with normal functional capacity and their eligibility to avail normal opportunities similar to their peer groups, (4) to create a comprehensive cardiac disability scoring (CCDS) system for disability certification based on subjective and objective evaluation of functional capacity and the corresponding heart disease category group, and (5) to create a reference literature for the issues of education, employability, insurability, and vocational counseling based on this document.
The evolution of this manuscript has been discussed in view of relevant observations made by a team of cardiologists, cardiac surgeons, intensivists, pediatricians, social workers, etc.
This manuscript suggests a CCDS system to lay down criteria for disability status for eligible patients suffering from cardiovascular diseases. It intends to offer a unique scientific tool to address the psychosocial and socio-economic bias against patients with heart diseases of heterogeneous nature.
“Resourcelessness of our patients makes them stoic and trusting and that increases our responsibility several folds.” Prof (Dr) SS Kothari .
The hemodynamic abnormalities in children, adolescents, and adults with cardiovascular disorders (CVD) are known to have a heterogeneous natural history and outcome [1,2,3,4,5,6,7]. Due to the increasing availability of advanced and refined cardiac procedures, there is a decline in overall cause-specific mortality rates for all ages by at least 71% . About 40–60% survivors may have suboptimal functional capacity (FC) even after interventions, requiring lifelong expert consultation, medical support, or multiple re-interventions [4,5,6,7,8,9,10,11]. These requirements would then need further scrutinization for cost of care, resource utilization, and quality of life in terms of physical as well as the psychosocial stress [1,2,3,4,5,6,7,8,9,10,11]. Such financial burdens are also due to exorbitant costs of cardiac rehabilitation or work loss in the family. Lack of non-discriminatory provisions for social security, such as health or life insurance and prioritized full employment, complicate the condition [1, 2, 5, 6, 8]. There are several countries extending disability benefits to cardiac patients [12, 13]. On the other hand, despite emerging epidemiological trends indicating the rising burden of CVDs, cardiac diseases are not included in the list of 21 benchmark disabilities notified by the Department of Empowerment of Persons with Disabilities, Ministry of Social Justice and Empowerment, Government of India, under the newly enacted “RPWD Act, 2016 [2,3,4,5,6,7,8, 14,15,16,17,18].” The RPWD Act, 2016—a reincarnation of the “Persons with Disabilities (Equal Opportunities, Protection of Rights and Full Participation) Act, 1995”—is pragmatic and permissive in nature. It ascertains that disabilities may be “dynamic” in nature and may run a capricious course. Due to this paradigm shift in definition, 21 diseases (including congenital diseases like thalassemia) are on the notified disability list. The act enables India to participate in policies, plans, and programs in accordance with the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) (to which India is a signatory).
This manuscript provides a scientific tool to lay down criteria to segregate normal and abnormal functional capacity amongst the cardiac patients. It has been developed on behest of a group of pediatric cardiologists, pediatric cardiac surgeon, adult cardiac surgeon, intensivists, pediatricians, and social workers.
To define cardiac disability.
To categorize cardiac diseases/defects (groups A–C) according to severity and need for interventions.
To identify operated and unoperated patients with normal functional capacity and their eligibility to avail normal opportunities similar to their peer groups.
To create a CCDS system for disability certification based on subjective and objective evaluation of functional capacity and the corresponding heart disease category group.
To create a reference literature for the issues of education, employability, insurability, and vocational counseling based on this document.
Methodology: conceptualization of draft
Modern cardiac care is technology-driven and cost-consuming and requires lifelong medical attention and monitoring. The incentive to lay down a cardiac disability document sprung from the combined effect of many factors. Many instances as noted below can be recounted from day to day medico-social experience. These contradictions are rampant even today in the twenty-first century.
Reluctance to timely referral of a patient for intervention: Eisenmenger syndrome, a catastrophic complication of simple shunt lesions, is seen even in affluent families due to traditional bias against surgery amongst the pediatricians as well as the parents.
Sub-optimal financial assistance for underprivileged cardiac patients: Support from government schemes (e.g., Rastriya Bal Swasthya Karyakram [RBSK]) and non-government organizations (NGOs) is limited to simple heart diseases and there are no provisions for prostheses, pacemakers, and subsequent operations. RBSK does not support Fontan surgery, conduit replacements, and pacemaker implantations.
Extended hospital stay after a major cardiac surgery and expensive aftercare: It leads to loss of daily wages for caretakers, spiraling them into debt-entrapment and distress financing to meet the demands of costly aftercare even if cardiac surgery was fully financed.
No medical care for cardiac patients operated with the help of the government or NGOs, presenting with non-cardiac emergencies like meningitis and cerebral malaria: These patients are considered high risk by local physicians and get referred to tertiary care centers which they may not afford. Many of them succumb to non-cardiac ailments.
Cardiovascular disability is not specified as disability: Financial assistance from specified funds for children with disabilities is not available to needy cardiac patients.
Apathy to psychological issues like depression in grown-up with congenital heart diseases (GUCH): Low self-esteem, incomplete education, and a fear of the future at the adolescent age contribute to mental health issues which are ignored completely by parents and physicians.
The issue of life and health insurance: In the absence of any guidelines to identify functional capacity of HD, discretion in allowing or disallowing a policy is in the hands of insurance companies and agents. The guidelines are required to frame effective health and life insurance policies.
Denial to avail normal opportunities despite a normal functional capacity (FC): They are prohibited from participating in competitive sports by parents and physicians and get rejected in job and visa interviews, etc. Few of adults with CHD who were operated late were denied leave for surgery and were often needed to discontinue their jobs.
Denial to administer benzathine penicillin for secondary prophylaxis of acute rheumatic fever (ARF): Many patients with a history of ARF never receive BPG and present with rheumatic heart disease (RHD) accompanied with severe left ventricular (LV) dysfunction due to denial to give BPG by many pediatricians or physicians.
The inferences from aforesaid points were that a holistic approach was needed to break the cultural barriers and to empower these patients appropriately for their future life by identifying their functional abilities. Also, many authors in various publications acknowledged the role of cultural barriers, financial constraints, underutilized prophylactic measures, deficient insurance facilities, inhomogeneous distribution of tertiary care centers across the country, and lack of long-term cardiac rehabilitation programs, in restraining the delivery of cardiac care in India [1, 2, 5,6,7,8,9]. Consequently, a group of professionals started working on this document in 2009 in order to get monetary support for cardiac patients within the ambit of Garibi Sahayata Nidhi, a scheme launched in 2008 by the Government of Madhya Pradesh to support underprivileged patients with disabilities. After the 2011 Disability census, a list of 19 diseases, including thalassemia and sickle cell anemia, was already forwarded to be enlisted in “Specified Disabilities” under the newly proposed bill. The Right of Persons with Disabilities Bill 2014 was introduced in the Parliament on 7 February 2014 and was passed on 14 December 2016 . Efforts to propose a consensus document on cardiac disabilities to the government have not done yet.
The 36th Bethesda guidelines provide the eligibility criteria to customize sport activities according to the type of HD and interventions. . This allowed us to understand the importance of assessment of FC in a patient with heart disease. Subsequently, a document titled: “Manual for Doctors to Evaluate Permanent Physical Impairment” was accessed on the internet . The manual was a compilation of recommendations made by a group of experts during the “National Seminar on disability Evaluation and Dissemination” convened in collaboration with the Director General of Health Services (D.G.H.S.) and World Health Organization (W.H.O.) at All India Institute of Medical Science (A.I.I.M.S), New Delhi, in 1981. Page number 24 of this manual mentioned briefly the evaluation of physical impairment due to cardiopulmonary diseases based on the New York Heart Association (NYHA) criteria . These incidences compelled us to make a determined effort to provide recourse to this vulnerable patient population. In the late 1990s, there was a global demand for a social security system with enhanced guidelines for cardiac patients. Dr. David S. Celermajer and Dr. John E. Deanfield, Cardiothoracic Unit, The Hospitals for Sick Children, Great Ormond Street, London, addressed this issue in a publication in 1993. They wrote “As the pediatric cardiac successes of the modern era reach adulthood they face problems of both, a medical and social nature. In the absence of appropriate guidelines some individual companies have set their own policies for young adults with congenital heart diseases. Unfortunately, many other companies have no policies framed on this subject, and in these situations/ circumstances, it is the patients who are inappropriately disadvantaged” .
The social security listing of cardiovascular disability (“Cardiovascular Disability: Updating the Social Security Listings”) by the Social Security Administration, United States of America, was accessed later, inspiriting us to take the matter further with the government . As discussed below, this document conceptualizes the heart disease group category system and subjective/objective criteria to elucidate a CCDS based on existing literature [22,23,24,25,26,27,28,29,30,31,32,33,34,35,36,37,38,39,40,41,42,43,44,45,46,47,48,49,50,51,52].
Definition of a person with disability (RPWD Act 2016): “a person with long term physical, mental, intellectual or sensory impairment hindering the person’s full, equal and effective participation in society .”
Definition of cardiac disability: “a reduction of productivity to 40% less than expected, in accordance with age and skill due to reduced residual working capacity or need for frequent rest due to chest discomfort, syncope, dyspnea, fatigue, palpitation and cyanosis, leading to absence from work, frequent admission to the hospitals to manage the symptoms of hypoxia, heart failure (HF) and/or arrhythmia [13, 18, 41,42,43,44].”
Temporary cardiac disability: “a cardiac-disability may be ‘temporary’ due to imminent improvement in functional capacity of the heart after the reasonable intervention or medical treatment [13, 18, 41,42,43].”
Permanent disability: “the status of disability secondary to the cardiac cause when history, records, and clinical examination suggest that features of disability are there for 12 months or more and are unlikely to be resolved even with medical intervention [13, 18, 41,42,43].”
Reasonable treatment: “the ‘treatment’ available at a location where it can be accessible to the person at a reasonable cost, can be expected to result in a substantial improvement in functional capacity, has a high success rate and carries a low risk to the person [13, 18, 41,42,43].”
Step by step process of disability certification of the patients having heart diseases
Application for disability certification received by the empowered committee from the patient or family after a cardiac diagnosis made by qualified physicians.
Exact diagnosis obtained by a cardiologist/pediatric cardiologist after reviewing history, review of records, clinical examination/appropriate investigations (heart rate [HR], respiratory rate [RR], blood pressure [BP], X-ray chest, electrocardiogram [ECG], Holter test, treadmill test [TMT], stress echo/stress thallium, echocardiography, computerized tomography [CT], angiogram, magnetic resonance scan [MRI], positron emission tomography [PET] scan, cardiac biopsy, ambulatory monitoring of blood pressure, investigations to evaluate kidney, liver brain).
Heart diseases are categorized as the heart disease category group (HDC Gr) A, B, and C. An entry score is assigned (Table 1).
Within each category, the HDs are subdivided into five subdivisions (1–5).
Subjective assessment of FC is done and a subjective score is assigned (Table 2).
Objective assessment and objective scores are assigned (Table 3).
Disability status (DS)/disability certificate (DC)—D0/D1/D2 is assigned.
Patients with co-existing illnesses: In patients with co-existing defects, the disability certification must be extended for the more severe disease, as in a case of Down’s syndrome, mental retardation may be the major disability. Patients also must undergo the assessment of development issues and evaluation of other organs like renal abnormalities and visual or hearing impairments.
Summary (step by step process of disability certification of the patients having heart diseases)
Heart diseases categories—HDC groups A, B, and C and their entry score (Table 1)
Subjective criteria score (Table 2)
Objective criteria score (Table 3)
Comprehensive cardiac disability score—CCDS (Table 4)
HDC group subdivision: 1–5 (see below)
Heart diseases (HD) and heart diseases categories (HDC)—groups A, B, and C [2, 3, 5,6,7, 9, 13, 22,23,24,25,26,27,28,29,30,31,32,33,34,35,36,37,38,39,40,41,42,43,44,45,46,47,48,49,50,51,52,53,54]
HD in a patient may be isolated or a combination of congenital heart disease (CHD); valvular heart disease (VHD); myocardial, pericardial, coronary arterial diseases (CAD); cardiac tumors; rhythm disorders; and pulmonary arterial hypertension (PAH)/systemic hypertension (SAH). Details of HDC group’s entry scores are given in Table 1.
HDC Gr A, B, and C are formed on three common variables:
Severity of hemodynamic abnormalities
Necessity for intervention
Heart diseases category group A—expected CCDS < 40 (Table 1)
Patients in the HDC Gr A are expected to have normal or near normal hemodynamics and FC and they are assigned a group entry score of + 5. According to the clinical evidence and investigations they fall into the following groups:
Asymptomatic non-progressive minor heart diseases, not needing intervention and have good long-term outcome.
Post-intervention HD with the restored FC; the patients are not expected to deteriorate in the future under usual circumstances and will not need intervention and have good long-term intervention.
A detailed list of HDs included in the HDC group A is given in Table 5.
Heart disease category group B—expected CCDS 40–70 (Table 1)
Patients in HDC Gr B are assigned a group entry score of + 10. They have or expected to have moderate to severe hemodynamic abnormality and abnormal FC. Clinical analysis and investigations may suggest one of the following:
A HD needs no intervention for now, but may have a chance of progressive deterioration hemodynamically affecting FC adversely and may need intervention in future, e.g., moderate aortic stenosis (AS).
The HD with significantly abnormal hemodynamics and moderately affected FC but can be expected to restore it after intervention. (e.g., large atrial septal defect [ASD]/moderate pulmonary stenosis [PS])
The post-intervention-HDs with restored FC have clinical evidence to suggest possible deterioration later in life due to (a) lack of age-appropriate growth disproportionate growth of repaired part (e.g., supravalvar aortic stenosis or aortic root dilatation after the arterial switch operation), presence of progressive ventricular (right ventricle [RV] or left ventricle [LV]) enlargement or hypertrophy (e.g., post tetralogy of Fallot [TOF] repair, reduced ejection fraction (e.g., post coronary artery re-implantation for anomalous origin of coronary artery from pulmonary artery [ALCAPA]), rhythm issues (e.g., atrial flutter post atrial septal defect [ASD] repair), or residual PAH (e.g., ventricular septal defect [VSD] closure) and (b) future complications are expected with valve or conduit placement surgery, e.g., post mitral valve replacement (MVR), conduit implantation for tetralogy of Fallot (TOF), coronary stenting, and Fontan surgery.
The HD underwent a palliative procedure to restore FC temporarily, waiting for complete anatomical (e.g., pulmonary artery banding [PAB] for multiple VSD) or physiological repair (e.g., post Glenn surgery).
A detailed list of HDs included in the HDC group A is given in Table 6.
Heart diseases category group C—expected CCDS > 70 (Table 1)
Patients in HDC Gr C are assigned a group entry score of + 20. They have progressive HD, expected to have moderate to severe hemodynamic abnormality, and have reduced FC.
The clinical and investigational analysis suggests significantly altered cardiac output, systemic hypoxia, ventricular dysfunction, arrhythmia, and significant PAH or SAH and suboptimal outcome is expected, even if intervention is done, leading to persistent severe restriction of FC. Many of them may need continuous medical support to perform ordinary activities.
A detailed list of HDs included in the HDC group A is given in Table 7.
Subdivision of heart disease category groups
HDC Gr A, B, and C are further subdivided into five subdivisions. The subdivisions do not influence disability score.
Heart diseases (HD)—unoperated
Heart disease (HD) with corrective surgery or intervention
Heart disease (HD) of hemodynamic significance which improved by palliative intervention
Systemic arterial hypertension (SAH)/pulmonary arterial hypertension (PAH) or pulmonary venous hypertension (PVH) ± hemodynamically insignificant pre- or post-operative structural heart disease
Dominant arrhythmia ± hemodynamically insignificant pre- or post-operative structural heart disease
Table 2 contains variables of CDS subjective criteria scores. Maximum contributory score allowed for this table is 40. The scores are based on NYHA functional classification for patients above 14 years of age . For pediatric age group (≤ 14 years of age) the Ross Modified Classification for Heart Failure has been adapted .
Table 3 contains variables of CDS subjective criteria scores. Maximum contributory score allowed in this table is 40. The criteria are based on standard objective cardiac assessments of the patient and hospital records.
Comprehensive cardiac disability score disability scale and disability certificate (Table 4)
CCDS is calculated by summing up HDC group entry scores (Table 1), subjective criteria scores (Table 2), and objective criteria scores (Table 3). Maximum CCDS can be 100 which can be rated on a disability scale (equivalent to global disability score) for percentage disability (Table 1).
Disability certificates (Table 4)
“Disability status” and type of disability certificates (DC) will be decided by the CCDS. As discussed before, the cardiac disabilities are dynamic by nature, thus needing revision as and when required. Therefore, disability status needs to be re-evaluated every 2 years, allowing the disability status to be upgraded or downgraded for the given patient. An exception can be made for patients with cardiac disabilities like Eisenmenger syndrome with no chance of recovery, by extending the duration for renewal of DC. The process of certification is summarized in flow charts 1 and 2 (Fig. 1).
Patients with CCDS < 40 are expected to have less than 40% impairment of FC on the Global Disability Scale. They are accorded with certificate D0 which predicts none or mild disability. They must be considered comparable to peer group and may be awarded a fitness certificate if they demand.
Certificate D1 (temporary disability certificate)
Patients with CCDS 40–70 are expected to have 40–70% impairment of functional capacity of the Global Disability Scale.
Patients with CCDS > 70 (> 70% impairment of FC on the Global Disability Scale) having a HD which can be treated with intervention to restore FC must be accorded a D1 certificate and must be sent for intervention.
Patients with CCDS < 40, but with a lesion which may deteriorate over the period of time due to the nature of disease or due to the underlying disease process (e.g., mitral valve [MV] prolapse without mitral regurgitation [MR] in a patient with Marfan syndrome).
Certificate D2 (permanent disability certificate)
If a patient with HD of hemodynamic significance is unsuitable for any successful intervention to improve the functional capacity or suboptimal results were achieved by intervention and no further intervention is possible, D2 certificate can be awarded.
Patients with CCDS > 70 (> 70% impairment of functional capacity on Global Disability Scale).
Patients with CCDS 40–70 (40–70% impairment of functional capacity on Global Disability Scale) who are unsuitable for interventions and are expected to be dependent on lifelong drugs, devices, or any other therapy to maintain their routine can be considered for D2 certificate. Examples are post-cardiac transplant patients, patients with implantable cardioverter-defibrillator, and patients with Eisenmenger syndrome.
Prefixing the disease category along with the disability certificate
In addition, the patient categorization of diseases (group A1–5, B1–5, C1–5) would add further specificity if it is prefixed to the disability certificate, e.g., A2D0 (HDC group A, subdivision 2, disability certificate D0) would imply a patient with a significant cardiac lesion who has been successfully operated and has no disability, while C5D1 (HDC group C, subdivision 5, disability certificate 1) would mean that it belongs to a patient with serious underlying heart disease with an ongoing rhythm issue but which may improve by the intervention (disability certificate D1).
Table 8 provides few more examples of the prefixing of respective HDC group and its subdivisions with appropriate disability certificates.
Benefits for the patients grouped under the disability grading system
Prioritization of CVD in national health policies and funding
Disability status of cardiac patients will enable policy action to create a cost-effective population-based integrated health promotion programs and treatment strategies .
Disability benefit to individual patients
Patients with certificate D2 must be offered the same facilities as are provided under the “Rights of Persons with Disabilities Act, 2016 .”
Building future policies
Health and life insurance [4, 8, 13, 20, 52]: The group listing and disability certification (D0) help in identifying patients who are hemodynamically and functionally equivalent to the peer groups. They may have a legal right to procure a health or life insurance at a standard premium for the holders of D0 certificate while appropriately designed extra-premium can be offered to those who have D1 certificate.
Guidelines for sports activities [2, 53, 54]: Patients who have D0 certificates may participate in any sports activity (provided eligible under the screening guidelines for peer group). Those with the D1 certificate would need more stringent screening to be eligible for sports high in static and/or dynamic components. Many patients with the D2 certificate may be eligible for sports low on static and dynamic components.
Discussion and review of literature
Prevalence of heart diseases
Congenital heart diseases
In a recent single-institution study, the prevalence of neonatal heart disease was found to be 8.07/1000 live births while 44% of these babies had significant HD . Table 9 shows the prevalence rate of CHD (0.3 to 9.2/1000 population) in older children, as reported in various published series . The crude birth rate varies in various parts of India, and accordingly, the number of babies born with CHD shows a marked regional variation (Fig. 2) . According to the status report on CHD in India (2018), approximately 27,000 patients (9700 infant and 1700 neonates) underwent interventions in 47 tertiary pediatric cardiac care centers in the years 2016–2017 . Probability to access appropriate interventions for critical heart disease varied regionally and it was higher in the south (72%) and west (28%) and lower in the north (17%), central (7.6%), and northeast (0%) regions . Only one fourth of needy infants born every year could access optimum cardiac care . It is estimated that about 60,000 to 90,000 new cases of CHD are added every year to the existing pool of patients [5, 24]; 70–90% of them are expected to survive if they have access to appropriate modern health care [2,3,4]. Besides the CHDs, other heart diseases like CAD, rheumatic heart disease (RHD), cardiomyopathies (CMP), rhythm disorders, cardiac tumors, and pericardial diseases have a significant presence in India [1, 2, 5,6,7].
Rheumatic heart disease (RHD): primordial prevention and secondary prophylaxis
The estimated prevalence of RHD is less than 1/1000. Moreover, subclinical or silent carditis is expected to be 10 to 20 times higher than manifest RHD and has a potential to escape from secondary prophylaxis, if undetected . A significant difference was reported on the prevalence of RHD in school children screened simultaneously by clinical examination (0.6/1000) and echocardiography (20/1000) . The data from the Global Burden of Disease Study (GBDS) India 2016 revealed that the prevalence of RHD was 2.4 times the global average. Yet, the relative contribution of RHD to CVD-related percentage mortality (1.1%) and percentage DALYs (disability-adjusted life-year 0.8%) has declined (Table 10) . Furthermore, RHD is now less prevalent in high economic transition level states (ETL; Fig. 3) .
The onset of infective endocarditis (IE), in general, may imperil the outcome of the structural heart defects (operated or unoperated) claiming a higher than usual mortality and morbidity. The incidence of IE in western population is reported as 1.7–6.2 cases per 100,000 patient years, while the assumed incidence in India based on published studies is expected to be at least 17,000 episodes per year .
Cardiovascular diseases in adults—coronary artery disease in India
CAD is emerging as the significant cause of morbidity and hampered productivity and substantial mortality amongst the adult population . Prabhakaran et al. analyzed data from three large prospective studies done in India and compared it with GBDS, 2010. They found higher death proportion attributable to CVD (30–42%) and an age-standardized CVD-related death rate (255–525/100,000 [male] and 225–299/100,000 [female]) . Indian data from GBDS (1990–2016) revealed gender-wise percentage of total deaths and DALYs due to CVD and its components (Table 10) . The prevalence of CVD as a whole and ischemic heart diseases times) was 1.3 and 1.6 times higher than the global average, respectively . Figure 3 shows state-wise prevalence of CVD (a), ischemic heart disease (b), stroke (c), and RHD (d). The authors classified states into four ETL groups based on the ratio of DALYs of communicable and non-communicable diseases as follows: high (< 0.3), higher-middle (0.3–0.4), lower-middle (0.41–0.55), lower (0.56–0.75) . The study documented that CVD prevalence was highest in the high ETL state group (Kerala, Punjab, and Tamil Nadu), followed by the higher-middle ETL state group (Andhra Pradesh, Himachal Pradesh, Maharashtra, Goa, and West Bengal) . The study also found a high prevalence of a gamut of risk factors like dietary risks (56,·4%,), high SBP (54,·6%), high total cholesterol (29,·4%), high fasting plasma glucose (16,·7%), and high BMI (14,·7%), as well as tobacco use, less use of fresh fruits, and pollutions. Prevalence of mutation of specific genes (e.g., lipoprotein-related genes, endothelial nitric oxide synthase gene, CYP11B2 and CYP2D6) can also be partly responsible for this epidemiological shift [15, 16].
Adolescent and adult population with CHD (GUCH), Kawasaki disease, and metabolic syndrome have the additional risk of CAD [3, 13, 52, 53]. These cardiac diseases are not covered under the individual health policies [54, 55].
Ability vs. disability
Many studies have classified CHD according to their hemodynamic importance [2, 27, 54]. In view of that, the goal of this manuscript is to identify three groups of cardiac patients based on their functional capacity: (1) those with compromised FC; (2) those with normal FC (minor or simple CHD) but get discriminated in fields such as employment, schooling, sports, health and life insurance, due to the mere mention of a diagnosis on their medical records, e.g., patent foramen ovale (PFO), tiny patent ductus arteriosus (PDA), small VSD, and left superior vena cava (LSVC) [2, 27, 54]; and (3) those who achieved normal FC due to natural remission or appropriate treatment.
Functional capacity in cardiovascular disorders and cardiac disability
As discussed before, the cardiac ailments are ordained to have changeable waxing-waning functional abilities [1,2,3,4,5,6,7,8,9,10, 13]. Therefore, cardiac disability criteria cannot be a single point assessment. Uncorrected heart diseases are usually associated with pressure/volume overload, unbalanced pulmonary and systemic blood flow (Qp/Qs) ratio, cyanosis, PAH, and myocardial ischemia. The ensuing irreversible myocardial damage terminates into intractable arrhythmia, congestive heart failure (CHF) and systemic hypoxia, increasing the risk of any intervention. The combined cardiopulmonary dysfunction in these patients limits the capacity to initiate, sustain, or complete even routine activities. Up to 25% of complex CHDs may present with HF in adulthood [4, 26, 27]. The operated patients may also have suboptimal FC in the presence of residual defects, ventricular dysfunction, chronotropic incompetence, tachyarrhythmia, heart block, SAH, PAH, PVH, prosthesis implantation, post-cardiac transplant deconditioning, IE, and co-existing multi-organ dysfunction [2, 22,23,24,25, 28,29,30,31,32,33,34,35,36,37,38,39,40]. These patients need to undergo evaluation of cardiac disability based on a scoring system utilizing existing subjective and objective parameters, for the assessment of functional capacity [11,12,13, 20].
Inclusion of cardiac diseases in the HDC Gr A, B, and C is based on hemodynamic significance, type of HD, natural history, amenability to intervention, and overall outcome [2, 3, 5,6,7, 9, 13, 22,23,24,25,26,27,28,29,30,31,32,33,34,35,36,37,38,39,40,41,42,43,44,45,46,47,48,49,50,51,52,53,54]. HDC Gr A, B, and C would contribute an entry score of 5, 10, and 20 respectively. In many cases, a detailed diagnosis can foretell the perspective functional capacity. For example, a small PFO would be included in the HDC Gr A (subgroup 1) which suggests no or mild disability (D0 certificate) but PFO with cryptogenic syncope would qualify for HDC Gr B (subgroup 1). The natural history of any HD is predictable to a large extent unless an acquired factor like bacterial endocarditis superimposes to change the natural history of a HD . The interventions are also important modifier of natural history of a HD, and are expected to improve the FC of a patient but rarely they may fail to yeild good results.
Subjective criteria—social vs. medical model of disability
Table 2 elaborates on subjective assessment of FC. The disability can be evaluated with the help of subjective scoring of symptoms by age-appropriate methods NYHA for > 14 years of age and modified Ross criteria for < 14 years of age [12, 13, 20, 40,41,42,43]. People with a disease are viewed as being disabled by biased behavior of society rather than by their own illnesses . Hence, the patient’s own narration has to be taken into consideration besides the elicitation of clinical signs while evaluating the disability [12, 13, 18, 20]. The fear expressed that a patient may feign symptoms in order to get “disability benefit” must be allayed for the fact that objective criteria are stringent and would prevent any malingering.
Objective criteria—elicitation of relevant tests and diligent verification of hospital records
Table 3 shows a systematic approach to assess FC objectively based on existing parameters described in literature [12,13,14, 44,45,46,47,48,49,50,51,52]. Examination of longitudinal meticulously kept medical records gives information about the frequency and duration of hospitalization, basal saturation and need for oxygen therapy, polycythemia, documented episodes of syncope and other cardiac events, systemic congestion of cardiac origin, capacity to exercise, episodic elevation of cardiac enzymes and abnormal electrocardiograms, cardiac interventions, need for temporary or permanent pacemaker implantation, co-existing illnesses, and response to medical management. The old echo reports may reveal a pattern of undulating course of cardiac dysfunction and pulmonary hypertension. Echo-imaging also provides surrogate objective parameters like structural and functional abnormalities of the heart, PA pressures, basal or stress-induced regional wall motion abnormality due to reduced coronary perfusion, valvular stenosis or regurgitation, dilatation of ventricles, ventricular dysfunction, pericardial effusion, residual defects, and cardiomyopathy. The information obtained from echo or other imaging modalities is pertinent to diagnosis and are ancillary to the overall assessment of functional capacity. Nevertheless, functional capacity as we know is the ability to initiate and sustain accustomed and unaccustomed exercise, indicating the efficiency of the integrated functioning of the cardiovascular-pulmonary unit, in the presence of a cardiac disease [19,20,21,22,23,24,25,26,27,28,29]. Determination of peak VO2/METs in response to exercise (submaximal treadmill or bicycle exercise testing) or 6-, 9-, and 12-min walk tests are the objective methods described in the literature to assess FC of a patient with the compromised cardiac status [44,45,46,47,48,49,50]. High level of N-terminal pro BNP (NT-proBNP) and B-type natriuretic peptide (BNP) levels have been used to grade severity of CHF in the modified Ross classification of HF .
Unheeded issues of cardiac patients: psychological, social, and financial rehabilitation
An important but often ignored aspect of management of CVD is psychosocial and financial rehabilitation. As discussed before, patients with no hemodynamic issues (HDC group A) may be treated equally with the peer group, in terms of job, insurance, and social acceptance [57, 58]. On the other hand, patients with hemodynamically significant HD (HDC groups B and C) have a myriad of issues related to marriage, pregnancy (women with CHD), education, psychosocial behavior, and employment [58,59,60,61,62,63,64,65,66]. A German series reported multiple complications in a cohort of 267 pregnant women like high incidence of arrhythmia (12%), deterioration of NYHA class (30%), and premature delivery (12%) . Psychological issues like depression remained undiagnosed in patients with HD . Oh et al. found increased anxiety, depression, and somatization in Korean children with CHD . Malpas et al. reported high judicial encounters (0.9%) in a series consisting of 1640 ACHD (adults with CHD) . Adults (above 25 years of age) with complex CHD were found to have less chance of employment when compared with a peer group (64% vs. 83%) . In a series consisting of 135 adult patients, 88% patients with complex CHD had at least 1 long-term complication (arrhythmia, heart failure, or pulmonary hypertension) . A significant number of patients with complex CHD from this series, had poor NYHA class (38.1%), poor pass rate (45.7%), poor sports activity (50%), and also very low annual salary income (61.5% < 11,500 euros/year) . Consequently, the GUCH population is expected to have a suboptimal social-demographic outcome (educational attainment, employment, and relationship) culminating into psychopathological tendencies (i.e., risk-taking behavior, substance abuse, and other criminal activities) [60,61,62,63,64,65,66].
Direct and indirect microeconomic effects of a heart disease on affected families leading to debt-entrapment and poverty
Management of cardiac diseases is usually self-financed by the family resulting in catastrophic health spending (CHS).
The microeconomic impact of cardiac surgery on the families of patients with CHD was evaluated; 81% of the families struggled financially and went for distress financing, 4% had health insurance, while 10% were affordable . Even in the post-operative period, 56% of the families needed to change their lifestyle to accommodate the financial burden .
Rising incidence of cardiovascular diseases
The rising incidence of cardiovascular diseases in adults has an impact on macroeconomic due to loss of the working force owing to morbidity and mortality. Ischemic heart diseases (IHD) and stroke are responsible for > 80% of CVD . India has an estimated age-standardized CVD death rate of 272/100000, higher than the average global mortality [14,15,16,17]. Huffman et al. assessed the microeconomic impact of CHS and distress financing of CVD in four countries (India, China, Tanzania, and Argentina) . India had the lowest insurance coverage and highest CHS amongst them . In a nutshell, the microeconomic effects of morbidity cost of CVD include direct (ambulance, hospital, interventions, etc.) and indirect costs (due to loss of working hours and income) [9, 14,15,16,17, 67]. Insurance for cardiac diseases has been done successfully in other countries and needs to be replicated in India .
Need for a multidisciplinary approach for patients going through cardiac rehabilitation programs [3, 4, 11, 12, 26, 27]
A post-intervention, cardiac rehabilitation program improves long-term survival, quality of life, and psychological well-being [68,69,70]. These programs must have a cost-effective multidisciplinary approach to handle the multiple issues like treatment of co-morbid factors, patient’s (and parent’s) education, physiotherapy, neuro-developmental growth, psychiatric problems, speech, visual and hearing impairment, and underlying genetic syndromes [69, 70].
Functional capacity-based sport advisory for patients with heart diseases
Dean et al., in a series of 177 patients (consisted of mild, moderate and severe CHD), found that participation in frequent physical activity and competitive sports led to higher maximum predicted oxygen consumption and relatively lower body mass index (BMI). In this series, 29% of patients with severe HD also participated in competitive sports, defying the Bethesda guidelines. Several such studies from literature now maintain that sports protocols and advisories based on individual’s functional capacity and sport classification may eventually improve quality of life [50, 51].
In the last few decades, there has been a substantial emphasis on timely diagnosis and appropriate intervention; however, issues related to social security, cardiac rehabilitation, and economic independence have not been given much attention. Social insolence and stigma have been the critical causes of limited opportunities for a patient with heart disease within their family, society, and in the job market. Nonetheless, in an extensive PubMed and Google search, no guidelines were found related to the disability, insurability, and employability of cardiac patients in India. This manuscript is guided by a group of professionals and proposes “CCDS” based on subjective and objective criteria and heart disease category groups. The manuscript uniquely offers a scientific tool to frame the criteria for “disability status” for eligible cardiac patients, to bring cardiac disability in the list of specified diseases under the newly enacted RPWD Act, 2016, in order to empower these patients legally.
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We are grateful to Late Prof (Dr.) Rajendra Tandon (Retired HOD Cardiology, AIIMS) who constantly inspired us in his life time, to work untiringly on this project. The manuscript was reviewed several times and was approved by a group of professionals, comprised of pediatric and adult cardiologists/cardiac surgeons /intensivists/ pediatricians before the submission. We want to express our gratitude to Dr Vishal Singh (Intensivist, Jaypee Hospital Noida), Dr Sameer Shrivastava (Director noninvasive cardiology, Fortis Escorts Heart institute New Delhi), Dr Munesh Tomar(Pediatric cardiologist, Meerut), Prof (Dr) S.Ramakrishnan (Cardiologist, AIIMS), Dr Rani Gera (Sr Specialist, Safdarjung ), Dr Anita Khalil (Consultant cardiologist, Heart Centre , New Delhi), Dr Chitra Narsimhan (Pediatric Cardiologist, Jaydeva instate, Bengaluru, Karnataka), Dr Yugal K Mishra(HOD, CTVS Manipal hospital, New Delhi), Dr Swati Garekar(Pediatric Cardiologist, Fortis Hospital, Mumbai, Maharashtra), Dr Sushil Azad (Ped cardiologist, Fortis Escorts institute New Delhi), Dr Supratim Sen (SRCC NH Children's Hospital Mumbai, Maharashtra), Prof(Dr) Jyoti Singh (Retired -HOD Ped SSMC Rewa,M.P.), Dr Amitabh Chattopadhyay (Senior Consultant Pedi cardiology, Narayana Superspecialities Hospital, Kolkata, W.B.), Prof ( Dr) Meenakshi Sharma (Retired HOD Department Ped. JNU Medical College, Jaipur, Rajasthan) , Prof (Dr) ML Gupta, (HOD pediatrics-SMS Medical college Jaipur, Rajasthan), Prof (Dr)Shakuntala Prabhu (Pediatrics, Bai Jerbai Wadia Hospital, Mumbai, Maharashtra), Dr Ankur Sharma( Clinical Fellow, NICU, Norfolk and Norwich University Hospital, UK) Dr A. Banga (Senior Pediatrician, Gwalior, M.P.), and Dr Praveen Garg ( Sr Pediatrician, Gwalior, M.P.), Dr Ashu Sawhney (HOD, Neonatology, JAYPEE Hospital Noida, U.P.) for their expert assistance and encouragement throughout this difficult project. We want to offer our sincere thanks to Mr. T.D. Dhariyal (Commissioner for Person with Disabilities, Govt of NCT, Delhi) for his guidance regarding the methodology and the creation of scoring system. We also want to appreciate Mr. Sakesh Kumar (Senior Advocate, Supreme Court) for helping us in understanding legal aspects of matter. Professor (Dr.) Devendra Mishra (Department of Pediatrics MAMC, Delhi), who helped us selflessly, in shaping this manuscript, we are thankful to him. We are also thankful to Ms. Paramita Mishra, Ms. Vidya Kapoor, Dr Arun Subramaniam, Dr Prateek Mittal for helping us in proof-reading of the manuscript and giving us valuable suggestions. We want to acknowledge efforts of Ms. Shanti Dubey(President NGO SDYSS– NGO; in-charge-SPANDAN program), Prof (Dr.) H. P. Singh (President, Redcross Society Rewa MP, Retired HOD Department of Pediatrics, SSMC Rewa, M.P.) and Mr. R Srivatsan national coordinator of ‘Genesis’ foundation (working for children with heart disease), who helped us by their inputs on social aspects of cardiac diseases. We also would like to thank all those patients-children, adolescent and adults as well as their families who continued to share their plights with us and compelled us to look beyond the medical aspect of their diseases.Finally, we are indebted to editorial board for considering this unique but unconventional manuscript for publication and putting it under the blind review done by highly qualified, erudite and sincere experts who critically scrutinised every sentence and provided appropriate suggestions which helped this manuscript tremendously.
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Mishra, S., Sharma, R. Proposed method for evaluation and categorization of functional capacity of children, adolescents, and adults with cardiac diseases to bring them in existing social justice system by creating the cardiac disability criteria. Indian J Thorac Cardiovasc Surg 36, 207–225 (2020). https://doi.org/10.1007/s12055-019-00895-y
- Cardiac disability
- Comprehensive cardiac disability score (CCDS)
- Heart disease